“Agency heads are scared to death of how the patient population will react if XMRV works out.” - Suzanne Vernon, September 11th, Lobby of the Salt Lake City Downtown Hilton – During a break at the 2010 OFFER Utah Patient Education Conference

I’ve been struggling with what I ought to do with this for almost six months. Suzanne Vernon said this during a conversation she was having with me and Cort. She just sort of interjected it. No real need nor was there much of a segue. She said that it should not be repeated. Yet I wondered why I earth she would say something like that to someone she had just met.

I was troubled by Dr. Vernon’s words. I wished I had not heard it. I discussed the comment at length with my wife. I’ve asked Cort about it on a couple of occasions. He responded that he does not recall having heard her say it. And so I approached Jennie Spotila and I asked her what Dr. Vernon might have meant. That conversation took place on December 10, 2010. Jennie said she would check with Dr. Vernon and get back to me. I haven’t heard back from Jennie on this topic and so I’m assuming that there won’t be a reply. Why can’t this be shared with the patient community? Who am I protecting and who is being harmed? I have not felt that it was right to keep this from the patient community.

I was reading Hillary Johnson's recent post about “FRENEMIES”. Hillary stated ” Whatever these two [Suzanne Vernon and Kim McCleary] tell you they’re doing, you can assume it’s about one-twentieth of what they’re doing behind the scenes and, given the lessons of history, you can bet it’s not on your behalf.” I was reminded of Dr. Vernon’s comments.

And what about Hillary's comment about Kim McCleary's inside voice:

Here’s an example of how McCleary uses her inside voice, which comes from an April 9, 2010 e-mail McCleary sent to government officials:

“I’ve noted online that several European CFS/ME patient organizations are preparing to petition their governments to follow Health Canada’s lead. So far we are resisting pressures to do likewise, with expectation of a report on the blood safety study (NHLBI, BSRI, CDC, FDA, etc.) to come, hopefully in time for the May 10 DHHS CFS Advisory Committee meeting.” (Italics mine)

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I’m quite sure from the CAA’s actions and public statements that they do not share my sense of urgency or appreciation of the severity of ME. I’ve come to feel that not sharing Dr. Vernon’s comment is keeping a secret that can only perpetuate the harm being done to all ME patients.

Agency heads are scared to death of how the patient population will react if XMRV works out. - Suzanne Vernon, September 11th, Lobby of the Salt Lake City Downtown Hilton During a break at the 2010 OFFER Utah Patient Education Conference

Ive been struggling with what I ought to do with this for almost six months. Suzanne Vernon said this during a conversation she was having with me and Cort. She just sort of interjected it. No real need nor was there much of a segue. She said that it should not be repeated. Yet I wondered why I earth she would say something like that to someone she had just met.

I was troubled by Dr. Vernons words. I wished I had not heard it. I discussed the comment at length with my wife. Ive asked Cort about it on a couple of occasions. He responded that he does not recall having heard her say it. And so I approached Jennie Spotila and I asked her what Dr. Vernon might have meant. That conversation took place in December 10, 2010. Jennie said she would check with Dr. Vernon and get back to me. I havent heard back from Jennie on this topic and so Im assuming that there wont be a reply. Why cant this be shared with the patient community? Who am I protecting and who is being harmed? I have not felt that it was right to keep this from the patient community.

I was reading Hillary Johnson's recent post about FRENEMIES. Hillary stated Whatever these two [Suzanne Vernon and Kim McCleary] tell you theyre doing, you can assume its about one-twentieth of what theyre doing behind the scenes and, given the lessons of history, you can bet its not on your behalf. I was reminded of Dr. Vernons comments.

And what about Hillary's comment about Kim McCleary's inside voice:

Im quite sure from the CAAs actions and public statements that they do not share my sense of urgency or appreciation of the severity of ME. Ive come to feel that not sharing Dr. Vernons comment is keeping a secret that can only perpetuate the harm being done to all ME patients.

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Thank you CBS. You did the right thing. I just wish some former CAA board members would speak out.

“Agency heads are scared to death of how the patient population will react if XMRV works out.”

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I'd be scared too, if I was in their position.

Wouldn't just be the patients I'd be worried about either, the general population won't be too happy when they find out what has happened and the serious threat to which they have been unnecessarily exposed.

But too bad. The agency heads were in control, they made their nest, and now they have to lie in it. It is called accountability, and it is long overdue on this issue.

Yes, and they are right to be scared. I would feel the same. That's what might happen if you choose not to listen or help much. If it turns out you've been wrong you've put a lot of responsability on your shoulders.

Anyone with any knowledge of how CFS has been treated would know that if XMRV works out, the most angry, militant and belittled patients will have been shown to be right. That's not going to reflect well on those in positions of authority. I don't see commenting on that as reflecting poorly upon Vernon.

(PS: I've only been aware of Vernon since the XMRV stuff. I know others dislike the fact that she had worked for the CDC, asnd I've got no real knowledge of any of that).

Of course they are terrified, of course they should be, and of course they deserve to be in this position.

Fear is the enemy. Fear is what blocks our progress. Inspiring greater levels of fear in those authorities will only inspire greater levels of suppression. I recommend the opposite approach.

XMRV should never have been seen and presented as a massive threat,because it is here already and doing its damage. It is a massive opportunity for the world. If a retrovirus, vaccine-mediated or not, has been spreading, then its effects are with us already, and the knowledge of that has the exciting potential to change the lives of humankind for all our benefit. It could open up an understanding of neurological and immune disease that leaves humanity better off than we were without it. We should all be celebrating the opportunity of this knowledge discovery, not running and hiding from it, and not relishing the opportunity to use it as a stick to beat others with.

We all of us feel that deep sense of grievance, but if all we care about is revenge, maybe we don't deserve to be liberated, and maybe we won't be until we learn to let go of our anger and hatred. Mistakes were made, by everybody: it's time for us all to move on towards a better future. So everyone should ask themselves: What is most important to you: everyone getting better? or getting revenge on those who failed you? The mistakes we are talking about here are intellectual errors, as much as anything, and they are massively widespread, the majority of the world's population makes these kinds of errors every day, in one way or another, at one scale or another. If we can learn to forgive, there is a chance we may be saved.

“Agency heads are scared to death of how the patient population will react if XMRV works out.” - Suzanne Vernon, September 11th, Lobby of the Salt Lake City Downtown Hilton – During a break at the 2010 OFFER Utah Patient Education Conference

I’ve been struggling with what I ought to do with this for almost six months. Suzanne Vernon said this during a conversation she was having with me and Cort. She just sort of interjected it. No real need nor was there much of a segue. She said that it should not be repeated. Yet I wondered why I earth she would say something like that to someone she had just met.

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Thank you for telling us CBS. It is overwhelmingly in the public interest that we know this, so I think you have every moral right to tell us. It beggar's belief why Suzanne Vernon (a so-called advocate) didn't tell us herself.

It tells us straight from the horse's mouth that the agencies are not acting in our best interests (uncovering the truth), but instead acting in their own best interests (suppressing the truth). Of course any reasonable person would have expected this, but it is good to have confirmation direct from them.

Anyone with any knowledge of how CFS has been treated would know that if XMRV works out, the most angry, militant and belittled patients will have been shown to be right. That's not going to reflect well on those in positions of authority. I don't see commenting on that as reflecting poorly upon Vernon.

(PS: I've only been aware of Vernon since the XMRV stuff. I know others dislike the fact that she had worked for the CDC, asnd I've got no real knowledge of any of that).

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Then why the need for secrecy? What's being said behind closed doors with those inside voices? My concern is the apparent duplicity. The CAA's "gaffs" are far too consistent. They ought to be taken at face value and as a measure of where they actually stand on issues.

I agree that on the whole this is a huge opportunity. Unfortunately, when you break things down to the level of the individual, the excitement over community betterment is quickly overwhelmed as too many actors try to protect their turf.

Every time there's a feast, someone's ox gets gored and not everyone is willing to let that ox be theirs. Egos and careers (and bank accounts - no matter how much someone has, very few feel they have enough) will be defended with an astounding amount of energy.

Then why the need for secrecy? What's being said behind closed doors with those inside voices? My concern is the apparent duplicity. The CAA's "gaffs" are far too consistent. They ought to be taken at face value and as a measure of where they actually stand on issues.

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I see.

Those in authority always like to present themselves as more impartial and detached than they really are - deception to promote trust. It's such a widespread form of duplicity that I can forget to be irritated by it.

They might want to keep their own fears secret because of concerns like Garcia's - that it would mean they are suppressing the truth. I think those bureaucrats would realise how stupid it would be to try to cover up something like XMRV - that could be independently validated by numerous different international labs if it were true.

I think it is good for everyone to know this as one more fact that makes things slightly clearer. That said, I don't see it as earth-shattering news, just more confirmation of what really already know, that the "public health" agencies are acting in bad faith with us and the public as they consistently have been (regarding ME) for nearly 30 years. And Vernon is intimately aware of this. We know she always has been. She worked there and has her name on the Reeves Criteria paper. it confirms her allegiance is still with CDC not with actual public health and least of all with us ME patients. Kind of going thru the motions and collecting the CAA paycheck while we slip further into disability and death.

Of course they are terrified, of course they should be, and of course they deserve to be in this position.

Fear is the enemy. Fear is what blocks our progress. Inspiring greater levels of fear in those authorities will only inspire greater levels of suppression. I recommend the opposite approach.

XMRV should never have been seen and presented as a massive threat,because it is here already and doing its damage. It is a massive opportunity for the world. If a retrovirus, vaccine-mediated or not, has been spreading, then its effects are with us already, and the knowledge of that has the exciting potential to change the lives of humankind for all our benefit. It could open up an understanding of neurological and immune disease that leaves humanity better off than we were without it. We should all be celebrating the opportunity of this knowledge discovery, not running and hiding from it, and not relishing the opportunity to use it as a stick to beat others with.

We all of us feel that deep sense of grievance, but if all we care about is revenge, maybe we don't deserve to be liberated, and maybe we won't be until we learn to let go of our anger and hatred. Mistakes were made, by everybody: it's time for us all to move on towards a better future. So everyone should ask themselves: What is most important to you: everyone getting better? or getting revenge on those who failed you? The mistakes we are talking about here are intellectual errors, as much as anything, and they are massively widespread, the majority of the world's population makes these kinds of errors every day, in one way or another, at one scale or another. If we can learn to forgive, there is a chance we may be saved.

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Mark, I certainly don't agree. No matter what our feelings toward our persecutors, we deserve not to be persecuted. Not everyone can be Gandhi. And being Gandhi doesn't work for everyone and in every situation. Face facts, "they" don't care whether we suffer and die or not. We have seen that "they" will never act to help us unless they are directly threatened (ie afraid).

I try to 'act from love not fear'. I think it makes life a lot more enjoyable. But we have to recognize that 'they' act only from fear not love and we will not change their minds anytime soon. We haven't gotten them to act from love for the past 30 years and I am not going to wait another 30 years.

We all of us feel that deep sense of grievance, but if all we care about is revenge, maybe we don't deserve to be liberated, and maybe we won't be until we learn to let go of our anger and hatred.

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Mark no one here is seeking revenge as far as I can see. What we want is for public officials to be held to account for their actions. Not only for what has happened to us, but also what has happened to others, and what will happen to future generations.

What happens when the next disease comes along that they belittle and cover-up?

We don't have the moral right to forgive public officials for crimes committed against others. If people in public office have been guilty of criminal negligence then they should be punished to the full extent of the law, just like ordinary people are.

It is *not* about revenge. It is about protecting the public against those who have and would continue to cause harm due to their arrogance & negligence.

Mark no one here is seeking revenge as far as I can see. What we want is for public officials to be held to account for their actions. Not only for what has happened to us, but also what has happened to others, and what will happen to future generations.

What happens when the next disease comes along that they belittle and cover-up?

We don't have the moral right to forgive public officials for crimes committed against others. If people in public office have been guilty of criminal negligence then they should be punished to the full extent of the law, just like ordinary people are.

It is *not* about revenge. It is about protecting the public against those who have and would continue to cause harm due to their arrogance & negligence.

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Exactly. I'm in a fight for my life and those acting in greed and bad-faith need to be identified as such for this lie to ever end. Despite the fact I'm lying down doesn't mean I plan to take it that way.

I think it is good for everyone to know this as one more fact that makes things slightly clearer. That said, I don't see it as earth-shattering news, just more confirmation of what really already know, that the "public health" agencies are acting in bad faith with us and the public as they consistently have been (regarding ME) for nearly 30 years. And Vernon is intimately aware of this. We know she always has been. She worked there and has her name on the Reeves Criteria paper. it confirms her allegiance is still with CDC not with actual public health and least of all with us ME patients. Kind of going thru the motions and collecting the CAA paycheck while we slip further into disability and death.

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Justin,

The primary issue for me was that of "bad faith" and raising significant questions about allegiance of the CAA to the agencies versus acting on behalf of the patients. Fear can and should be used as leverage to create movement. Instead, it was hidden.

I've held all along that those finding XMRV and MLV simply appear to be looking more carefully. Nearly all of the negative studies have been reported with a huge sigh of relief as they are universally rushed to print. The subtext has been "Now, can we stop talking about these annoying people and their difficult to quantify complaints?"

Mark,

The CAA has made an art out of "missing" opportunities such as the initial response to the PACE study. The pattern is looking a bit suspect.

The primary issue for me was that of "bad faith" and raising significant questions about allegiance of the CAA to the agencies versus acting on behalf of the patients. Fear can and should be used as leverage to create movement. Instead, it was hidden.

I've held all along that those finding XMRV and MLV simply appear to be looking more carefully. Nearly all of the negative studies have been reported with a huge sigh of relief as they are universally rushed to print. The subtext has been "Now, can we stop talking about these annoying people and their difficult to quantify complaints?"

Mark,

The CAA has made an art out of "missing" opportunities such as the initial response to the PACE study. The pattern is looking a bit suspect.

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Well said CBS. It seems like it's our lives being played against "secondary" considerations which just isn't right.

I haven't had a chance to say I appreciated your decision to part ways with the CAA and how you went about it. I know it was not taken lightly.

And as much as I like Justin's avatar, you have the all-time best ever. If you ever decide to change it please let me know so I can copy that image. I'm not sure if I have that presentation squirreled away or not.

Mark no one here is seeking revenge as far as I can see. What we want is for public officials to be held to account for their actions. Not only for what has happened to us, but also what has happened to others, and what will happen to future generations.

What happens when the next disease comes along that they belittle and cover-up?

We don't have the moral right to forgive public officials for crimes committed against others. If people in public office have been guilty of criminal negligence then they should be punished to the full extent of the law, just like ordinary people are.

It is *not* about revenge. It is about protecting the public against those who have and would continue to cause harm due to their arrogance & negligence.

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There is nothing wrong with "revenge", by the way. I'm a forgiving person by nature, but everything has limits. What some call revenge is what others call justice.

In criminal law there are different theories about why there should be penalties. The consensus today, at least in continental Europe is more or less like this (out of memory):

- Justice: A wrong has been done and this has to be corrected by restoring balance. Some people call this revenge. But it is deeply human in the end and if you deny it to people there can't be peace.

- Protecting society by creating an example to get potential perpetrators to not commit a crime.

- Protecting society by eliminating the danger the perpetrator poses

I have never seen the CDC, the NIH or any agency as "the enemy". But certain individuals have failed us. I agree that the primary goal is of course to make progress, but this does not exclude seeking justice also (and this does not only come in the form of accountability of individuals, recognition is very important also). If something wrong has been done, i don't see why someone should not deserve to be liberated because he wants justice. Personally, in this case, i will forgive after the bill is paid. And i'm actually all nice, really

"There has been a tendency . . . to kind of pat people's hands and say everything's fine when there are real questions about whether the public health is being endangered..." Miller said. However, he added, government's proper role "is to tell people the Lord's own truth. And if that causes people to worry, then they should worry."

Anyone with any knowledge of how CFS has been treated would know that if XMRV works out, the most angry, militant and belittled patients will have been shown to be right. That's not going to reflect well on those in positions of authority. I don't see commenting on that as reflecting poorly upon Vernon.

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Shouldn't her comment reflect that what the 'agency heads' SHOULD be concerned about is NOT the reaction of the PATIENT population, but the implications for public health in general?

Fear is the enemy. Fear is what blocks our progress. Inspiring greater levels of fear in those authorities will only inspire greater levels of suppression. I recommend the opposite approach.

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Can't agree with this. It shouldn't matter what is the root of an appropriate response on the part of the agencies. Fear may not be optimal, but maybe fear is exactly what's needed, since NOTHING else has ever worked.

So everyone should ask themselves: What is most important to you: everyone getting better? or getting revenge on those who failed you? The mistakes we are talking about here are intellectual errors, as much as anything, and they are massively widespread, the majority of the world's population makes these kinds of errors every day, in one way or another, at one scale or another. If we can learn to forgive, there is a chance we may be saved.

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No. Sorry. Expecting accountability and 'revenge' are two very different things. I agreed with the idea of getting better far outranking 'revenge' on the Reeveses, the Wesselys, the Whites, after Lombardi et al, for a long time.

Then the Alter/Lo paper was withheld.
Then we were told the CDC paper was withheld.
Mere hours later, their paper hit the web, very early in the morning.
Then the CDC rolled out their new CFS website. The one with prominent links to 'childhood adversity' and a direct link to their negative XMRV paper (since directed elsewhere, to their XMRV page).
Then the 'Personality Features/Disorders' paper was published.

All that between June 30 & the end of July. Lo et al didn't appear for an additional 3 weeks+.

Then Bob Miller, Rivka, Charlotte, Dan Peterson, etc., got a meeting with NIH, who sent people who thought Steven Straus had been a positive influence on CFS.
Then the NIH held an XMRV workshop at which the Q&A featured some rather tense interactions between certain folks.
Then we had 'Science Day' at CFSAC, where Dr. LeGrice tried to convince everyone that the WPI study & the Alter/Lo study represented two completely different findings.
Then Cooperative Diagnostics published a negative XMRV-in-autism paper whose press release dredged up a then-year-old-quote by Judy Mikovits, utterly out of context.
Then ABC News ran a piece with a questionable, insulting headline, featuring a superbly conditioned athlete who demonstrated what great shape she was in following her recovery from CFS.
Then the CDC handed Beth Unger Reeves' job permanently.
Then Stoye & Coffin did their best to cast aspersions on the work of Alter & Lo at the FDA BPAC meeting, to the point where Harvey Alter felt it necessary to speak up about it.
Then we had 4 papers alleging contamination in Retrovirology, along with an editorial. To which Eric Klein of Cleveland Clinic had to respond on a blog, and in an interview on a blog, since the published suggestion that XMRV was not a human pathogen ignored that their work was based on methods other than anything described in the Retrovirology papers.
Then we have PACE, forget about the paper Nancy Klimas was involved with.

That's off the top of my head. Did I miss anything?

Prior to the withholding of Lo et al, I felt much energy was wasted on thoughts of revenge, when what mattered most was getting better.

Well, I still prioritize getting better over 'revenge.' But from October '09 to June '10, it was probably at least 75-25. Now it's probably more like 51-49.

“Agency heads are scared to death of how the patient population will react if XMRV works out.” - Suzanne Vernon, September 11th, Lobby of the Salt Lake City Downtown Hilton – During a break at the 2010 OFFER Utah Patient Education Conference

I’ve been struggling with what I ought to do with this for almost six months. Suzanne Vernon said this during a conversation she was having with me and Cort. She just sort of interjected it. No real need nor was there much of a segue. She said that it should not be repeated. Yet I wondered why I earth she would say something like that to someone she had just met.

I was troubled by Dr. Vernon’s words. I wished I had not heard it. I discussed the comment at length with my wife. I’ve asked Cort about it on a couple of occasions. He responded that he does not recall having heard her say it. And so I approached Jennie Spotila and I asked her what Dr. Vernon might have meant. That conversation took place on December 10, 2010. Jennie said she would check with Dr. Vernon and get back to me. I haven’t heard back from Jennie on this topic and so I’m assuming that there won’t be a reply. Why can’t this be shared with the patient community? Who am I protecting and who is being harmed? I have not felt that it was right to keep this from the patient community.

I was reading Hillary Johnson's recent post about “FRENEMIES”. Hillary stated ” Whatever these two [Suzanne Vernon and Kim McCleary] tell you they’re doing, you can assume it’s about one-twentieth of what they’re doing behind the scenes and, given the lessons of history, you can bet it’s not on your behalf.” I was reminded of Dr. Vernon’s comments.

And what about Hillary's comment about Kim McCleary's inside voice:

Here’s an example of how McCleary uses her inside voice, which comes from an April 9, 2010 e-mail McCleary sent to government officials:

“I’ve noted online that several European CFS/ME patient organizations are preparing to petition their governments to follow Health Canada’s lead. So far we are resisting pressures to do likewise, with expectation of a report on the blood safety study (NHLBI, BSRI, CDC, FDA, etc.) to come, hopefully in time for the May 10 DHHS CFS Advisory Committee meeting.” (Italics mine)

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I’m quite sure from the CAA’s actions and public statements that they do not share my sense of urgency or appreciation of the severity of ME. I’ve come to feel that not sharing Dr. Vernon’s comment is keeping a secret that can only perpetuate the harm being done to all ME patients.

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Thank you for telling us about this Shane. If someone from an organization I trusted to be working intelligently on my behalf told me not to repeat a comment like that, I would not, but I don't feel that way about the CAA, for the same reasons you outlined. There is definitely a pattern to their behavior, as a psychologist might say... mostly aimed at 'managing' patient response, as the McCleary comment suggests, and also protecting certain sacred cows like CBT/GET from outright attack (I still haven't figured out that one!). This comment posted on their Facebook page is similarly revealing:

CFS will be featured tonight on “The CBS Evening News with Katie Couric.” The report will focus on a new research study on biological markers identified in the spinal fluid of CFS patients. The study is embargoed until 5:00 p.m. We will send an analysis and links to CFIDSLink subscribers at 5:00. Note: Writing to CBS and Couric about the PACE study may only serve to shift the focus away from the exciting new report.

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After the total fiasco that was McCleary and the CAA's response to the PACE trial, they now want patients to stop writing in to educate Couric and CBS on the PACE study - which will doubtless be covered in the news story, and we've seen how well media coverage of THAT has gone - because it will distract from a study that the CAA tells us from their inside info will be covered, but which is embargoed until just before the news broadcast.

Odd that a study that sounds like another investigation along the lines of Baraniuk's work on evidence for neuroinflammation in CSF from CFS patients would be rushed to the evening news and actually be the focus of this story, according to the CAA, as opposed to the incredibly controversial PACE study that was recently published. And XMRV, so far, does not seem to be a focus at all, despite frankly being a potentially far more significant area of research than another study on evidence of neuroinflammation. Even if one says that, well, it's a good thing that at least they cover THAT, there is no question that they will also cover PACE, which makes patient input to CBS (the TV company, not Shane) essential. So was this just another gaffe by the CAA, with no connection to their pseudo-endorsement of the therapies used in the PACE trial, or was it a moment of paternalism towards the patient population, or was it more? I don't know but, like Shane and others, I'm having a hard time not seeing something more than incompetence running through the CAA's actions.

ETA - Thankfully, either the rumors that CBS would cover PACE were wrong or patient pressure made a difference (I suspect the former)! However, the point remains that patients should not have been asked not to send in comments.